The video I posted below is one example of our daily struggles with Allie and her feeding pump. Keep in mind that Allie needs her feeding pump 4 times a day and she wears it for 1 1/2 hours each time. This particular battle with her lasted a little over a half hour. Of course I didn't video tape the whole thing but I wanted to give you an example of what it's like in our house when Allie needs a feeding. Not every child is like this - some are better and some are worse.
Having a child with a feeding tube is challenging and by no means is it an easy way out. We battled with Allie for a year trying to get her to eat orally and now we battle daily with her just to tube feed her. It breaks my heart seeing Allie fight against her feeding tube 4 times a say like this but at this point in Allie's life, it's medically necessary for her to receive her feedings. Allie has post traumatic stress from all of the medical testing and procedures she has been through and as you can see in the video, Allie doesn't like anything to do with her tubie. I am praying one day Allie accepts her feeding tube and she allows us to hook her up with no problems.
In the video, Allie resisted the pump for a long time but in the end, she gave in and let me hook her up. I don't want to have to go through this every time she needs a feeding, it's exhausting on both of us. Don't get me wrong, sometimes about 3% of the time, Allie allows me to hook her up with no problems, but what you will see in the video is typically what happens when it's time for Allie's feedings. Of course we are working on this and it's not healthy for her to be so afraid or resistant to her feeding pump. After all, her feeding tube is what's keeping her alive. I now fully understand what a LOVE HATE relationship is - it's me and Allie's feeding tube!
I cannot say "enjoy" the video because there is nothing enjoyable about it. I'm sure many tube fed parents can fully relate to our daily experience and I completely sympathize with you. This is a real life struggle that we face everyday 4 times a day actually. But as always, I wouldn't change it for the world. Our little Allie is so special and we love her to pieces. She can be a challenge but God knows we can handle whatever little Allie brings to the plate!
I know this may make it more challenging, but could you leave her extension set on so that all you have to do is plug her in? We are continuous, but we have had periods where he comes on and off during the day. We tape the extension set to his tummmy with paper tape and then tape it to his back on top of his shirt so it is accessible. I am not sure how she would react to that, but this is so hard on both of you!!!!!
ReplyDeleteOh Jodi, this is so heartbreaking! Poor little Allie and poor you. You are such a good mom...and so patient! :) Keep up the good work! Everyone can definitely see the results of all of your hard work.
ReplyDeleteJodi, I'm sobbing my eyes out... all I can say is I love you guys so much and this Gramma's heart wishes and prays every day for Allie's miracle.
ReplyDeletePraying for little Allie to accept her feedings without all the stress.
ReplyDeleteOh Jodi...I wish I knew how to make her accept her feedings more easily...but aside from that, I am so amazed by your patience! Not sure I would be able to stay calm...especially doing that 4 times a day!
ReplyDeleteTry to remember that it won't be like this forever...I know it feels like it!!
I don't know what it would be...but let me know if I can do anything...
Steph
Jodi, what a journey you take each day! I'm praying for you and Allie as you work together to give her nutrition.
ReplyDeleteI was wanting to share a site with you when you mentioned you were journeying towards homemade blended diet.
http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm
It is my Marsha Dunn Klein. You may have already looked at her stuff. We are no where near this right now, just looking to move to Pediasure, but perhaps it will be our world in a year or two!
Darlene
blog.shef.ca
Hey Jodi, I have known you for so long and you have always had the patience of a saint. God has given you a gift with that for sure. I wish I could say or do something for Allie to make things all better for you guys. I send lots of prayers your way that one day all of this makes sense and Allie will not need tube feeds ever again. Love you guys!
ReplyDelete